Acoustic Neuroma Surgery, One Year Later

This is more for me – a need to get this out and on the page. You see, it’s an anniversary of sorts. A year ago on December 16, at this very hour that I write this, 5:30pm, I was still in surgery for removal of an acoustic neuroma.

But let me back up. During the 4th of July weekend in 2010, I worked a music teacher’s convention with a friend of mine, selling sheet music to whoever wanted to buy some. We were at the Marriott near the airport, in a huge ballroom with a hundred other vendors. Setting up, I kept getting dizzy and feeling nauseous. I brushed aside the feeling though, as I had too much to do, opening dozens of boxes and sorting through hundreds of pieces of sheet music. Going home that night gave me another jolt – my vision tunnelled a couple of times. It was late at night, I told myself. I was tired. I just needed to concentrate harder on driving.

The next day the head-spinning got worse. As people wandered around, the noise and the bobbing heads made me ill. A part of me thought – vertigo – well, I can handle that. Anyway, it was a difficult weekend but I got through it. My symptoms seemed to go away and I forgot about it – until Hubby and I started walking again during the long summer evenings. We found I kept veering off to my right and stumbling. He finally had to walk on my right side. That’s when I sat him down and said, look, there’s something wrong. I don’t know what it is and it’s probably nothing, but I think I need to see a doctor and figure this out.

One doctor led to another, which lead to my neuro-otologist, Dr. Akira Ishiyama, who just happens to teach that specialty at UCLA. One of the top dogs. HE will only work with one neurosurgeon, because this neurosurgeon will take the time to do the work with impeccable precison rather than speed. That neurosurgeon just happened to be the Chief of Neurosurgery at UCLA, Dr. Neil Martin. I had the gold standard surgical team. Which brings me back to the day of surgery.

It was a strange, lost day. I had trouble sleeping the night before; knowing someone is about to wiggle their fingers around in your brain isn’t exactly a soporific thought. But finally the alarm rang. We got up and dressed at o-dark-thirty, made it to UCLA hospital by 5am and filled out some minimal paperwork – most of it had already been done. Then we waited in a large waiting room filled with other people waiting to go into surgery for various and sundry reasons. All ages were represented; children sleeping on the chairs, couples in their 80’s, and everyone in-between.

The hubby was wigged, and doing his best not to show it. I played games on my iPod Touch, too restless to read. Finally my name was called and I joined the line. We were all processed – a nurse took each of us away, behind a door and then another door to a cubicle of a room with a bed and a chair and not much else. I undressed, put on their lovely gowns, kept my socks on, and waited, and listened to other surgical patients as they got ready and talked to the people that brought them.

My Neuro-otologist surgeon came by, and put his initials on the side of my head. My surgery was scheduled for 8am, but I could see my Neurosurgeon walking around in a suit – running late. He had charts to dictate or he’d get in trouble with someone. Finally they came in, put an IV in my left hand; the Head of the Anesthesia department came in to check on me, and tell me she’d be there during the whole surgery.

My Neurologist’s Chief Resident came by a couple times and assured me it wouldn’t be long. And then the wait was over – they wheeled me out of the cubicle, I waved to my husband with a smile, and they popped something into my vein and I was out.

Then I was back in. Amazing – I felt really good. Like no time at all had passed. Which – drat – it hadn’t. I had been out and my two surgeons had been looking at my last MRI, taken just two days before. They decided to go in through my Eustachian tube, instead of through my skull. Which meant a couple of things; they wouldn’t be cutting my skull open (YAY), and they would obliterate all the hearing facility in my Eustachian tube, thusly taking out all my hearing in my right ear (boo). And a bonus; they’d be pulling fat from my belly and sticking it into my head. Um, okay – but couldn’t they have taken more, while they were in there? But the changes meant I had to be mentally competent to say “yes” and scrawl my name. Which I did.

Both surgeons came and talked to me during this time; I did some joking around with them. Just so they would know that I’m a real person, not just an acoustic neuroma they were removing. The patient is not the procedure. But as soon as I signed off on it, they put me back under and I floated away.

Meanwhile, Hubby had been walking in the UCLA sculpture gardens when he got the call about the change in plans; he tried to get back to see me while I was still awake, but didn’t make it. He was going through a rough time; twice in his life, he changed on a dime, and both times it was due to something traumatic happening – once when a friend died in front of him. Worried that I might not make it, he was trying to figure out who and what he would be. Luckily I made it, so he’s stuck with me, lol!

The next time I woke up, I was already in ICU. This time, I knew I’d been through something. I had intravenous feeds on both sides of each hand (that’s four); one in the side of my neck, in case of extreme emergencies; and one in my ankle, just in case. A tight bandage around my head, heart monitor thingies and a catheter completed my medical equipment ensemble.

Ice chips brought on nausea. I felt brittle, parts of me were sore from being in the same position for so long. The time? Hubby says close to 10 pm. I’d actually been in surgery for 11 hours. Hubby kept our friends updated via text messages every time he heard. He was allowed to see me in ICU; his eyes were so worried, until he touched my right cheek, and I smiled. My whole face smiled, and he grinned at me. I was maybe a little weak on the right side, but all functionality was there. My surgeons had done what they said they would do from the very beginning; take out as much of the tumor as possible while keeping as much of the facial nerve intact as possible. Here’s a couple pictures of my staples, taken the day after surgery when they finally released me from the head torture. Note the two places where the docs put their initials (the higher place was the original entry site):

I was in the hospital a total of 4 whole days; they discharged me on the 5th day. The 20th of December, five days before Christmas, I was home. And my recovery began. The next few days, I found tape residue on the strangest parts of my body, which really made me wonder.

It’s been an odd year. My balance, that had gone missing in the months prior to surgery, didn’t all of a sudden come back; when I went to see my neuro-otologist, he said (it had been nine months) that now I was ready for rehab therapy. Um – it would have been nice to know it would take that long! But I went, and I’m better.

Mentally, I was squirmy for a long time. Writing has been difficult for me, and I’m grateful my publishing house is understanding. Even now I feel like, while I’m finally at about 90% of where I was prior to surgery, I’m not totally back. I may never get back. But that’s okay – I’m learning to deal with it. With the mental squirmies and with the wobbly balance. It doesn’t happen often, either the squirmies or the wobblies; when it does, I just have to laugh.

The above picture is three days after surgery – I didn’t feel “me” until I got my hands on the keyboard again. That’s the view out of my room at UCLA Hospital.

So; it’s been a year. I’ve found patience (especially after breaking my leg). I have gotten some amazing writing done this past month or so; plays. Writing I’m very proud of. The novel is almost done as well, and I’ll be turning it in soon. The job has been the final blessing of the year – it’s brought me back to being more “me”. That’s the only way I can describe it.

Above all, I have my husband, my hippy-guitar-jester guy who loves me, treasures me, and is there by my side, always, ready with a steadying hand. I know I could have gotten through this year without him; but I am so very, very grateful I didn’t have to.

I know I’ve been lucky, all down the line. Top notch doctors; excellent nursing care, both at the hospital and at home; awesome insurance; a loving family, friends who helped out. Most of all, the tumor hasn’t grown back. Plus my scar is small, and you can’t see it unless I show it to you. I’ve been very, very lucky.

But still, I feel my life has been divided. Before acoustic neuroma diagnosis and surgery, and after. It’s not something you have, and then forget about. It’s a game changer, for sure.

As I read over this, I realize I’m leaving a lot of “stuff” out. But if I put everything in, this would be a novel, so…

20 Responses to Acoustic Neuroma Surgery, One Year Later

I’m so glad that you made it through this with such a great attitude. I remember you posting messages from the hospital room. 🙂 Worried like mad while you were under. If it takes a little longer to write now, no biggie. The important thing is that you are here with us and that you still can! 🙂 Happy Anniversary and hugs!

I must have been lost or wasn’t following then because I didn’t know anything about this. Such a blessing that you came through in the condition you are in. Not just for you and your family but for all your friends and fans. So what if it takes you longer to do things. Perfection takes time! Hugs and love your way Christine.

Thanks for sharing your story. My father had a triple bypass in October and my husband just had a triple neck fusion last week, so I relate to what your husband went through. I’m glad you’re doing well!!

P.S. We found tape in odd parts of my husband’s body as well! They’d had wires connected all over him monitoring his nervous system since the problem involved his spinal cord.

Yeah, they were monitoring my facial functions during surgery. I’m sure that was why I had tape marks on my back, for instance…but it got to be hilarious. I’d be in the shower, and find more, and wonder. Really? Tape behind my left knee? Really! lol…

Wow Christine! What an amazing thing to come through. You are a strong woman. It had to be scary, but wonderful to feel your husband’s support there at your side through it all. Now it gives you a new well of experience to draw from when you write. Not that I want to belittle what you went through in any way. Hell no! So glad your passion has held strong through it all. So happy to have met you. 😀

I have the same feeling about my knee surgery (anniversary was 8/1). While not on a par with someone mucking about in your cranium, having the middle of both legs removed and replaced with metal parts did (and does) give me pause. Like you, I’m thankful for the surgery, that it worked well (no pain – yay!), and that my life goes on. Also, like you, I’m thankful for friends and family who supported my recovery.

Christine, I’m so glad I’ve ‘met’ you! A close friend has Trigeminal Neuralgia and I’ve watched her go thru two or three surgeries and she is still struggling bad. I know they aren’t the same but when I saw where your surgery site was, it reminded me of hers. I’m glad they found it early and you’re now on the road to recovery. May each day get better for you as you go forward. We are all blessed to have you in our life one way or another! We send our hugs and prayers!